pubic symphysisitis--tethered cord?

[irishred795]

Some background info: I have a 5mm herniation and had a cine study done early this spring showing restricted CSF flow. I have a small syrinx in my cervical spine. The specialist at Cleveland Clinic recommended I get MRIs to keep track of the herniation and syrinx, but wouldn't recommend surgery at this point. After having my first son, I started having severe pain in my back. When he was 4 months I finally went to the doctor because the pain had spread to my pubic bone area. There is no pain in the soft tissue, just the bone. After almost 5 years, I was sent for scintigraphy and there was a highlighted area showing inflammation in my pubic joint. It's extremely painful to walk and sit. When I lay down the pain is felt more in my back (sacroiliac joint). I've used Naproxyn, Ibuprofen, and Mobic (anti-inflammatory drugs) off and on for almost 5 years. Recently, I've had some chiropractic adjustments at the suggestion of my family doctor (even though I know this is not recommended for CM patients). Nothing is keeping the joint the in place. I've never had an MRI of the low back, I was wondering if I should suggest it to my doctor. When the pain is bad, I have trouble with bowel/bladder control, frequent urination, tingling in my feet, sciatic pain, etc. Just wondering, has any one else encountered this?

[irishred795]

Thanks so much for the info! I'll have to pay more attention to when the pain is worst. I hurt all day. I've never had an arthritis panel. My MRI showed stenosis, DDD, 2 bulging discs, narrowing of the neural foramina, and a syrinx in the cervical area. I'll have to see if my doctor will do a arthritis panel, urodynamics, or refer me to an ortho doctor.

[Jennyfoo]

Oh, and a steroid injection done into the sacroiliac joint from a pain management dr or orthopedic dr, done under flouroscopy, can provide a LOT of relief. I had my first injection a few months ago and it's really helped me. I can finally sleep more than an hour on one side before hip pain wakes me.

[Jennyfoo]

Sacroiliac joint inflammation is also the main symptom of spondyloarthropathies.   Spondylitis diseases including Ankylosing Spondylitis, Psoriatic Arthritis, etc are autoimmune in nature. Is the pain worse in the morning, after having been inactive(sleeping) for hours? Have you ever had an arthritis panel done?

The Spondy diseases cause severe back pain that usually radiates from the sacroiliac or lumbar and will be felt in the hips and groin as well. They also cause inflammation in areas where the tendon and ligaments attach to the bone(enthesitis). Examples include Plantar fasciitis, Achilles tendinitis, carpal tunnel syndrome.

The most common joints affected are the sacroiliac, vertebra, knees, ankles, and shoulder. They can, and do more often in women, cause arthritis in the smaller joints of the hands and feet too. I'm "lucky" and my hands and feet are affected too.

I'd recommend asking your dr to run an arthritis panel. If your Sed rate is elevated, it indicates inflammation. If it is elevated, then you need a referral to a rheumatologist.

These diseases are a lot like RA. Inflammation can affect your lungs, heart, eyes/vision, etc. If you have Sacroilliac joint inflammation, then you should be investigated for spondylitis. Hashimotos is a common comorbid of spondylitis too.

Good luck. I hope it's nothing major, especially not spondylitis, but it warrants investigation.

TTFN,
Jenn

[irishred795]

I don't think I ever thanked you for all of the info and peace of mind you've provided over the past year. It really helped to hear others with common symptoms and histories, it kept me from freaking out. It was good to know I wasn't a hypochondriac. It seems like I'm more symptomatic when the temperature drops. I live in NW Ohio. I'll be looking into the info you've given and talking to my doctor soon. You're an angel!

[selmaS]

I had a feeling this could be  ur issue...and it is genetic....and we do not all have all the same symptoms...I do not have the mitral valve prolapse either.

I only had on child and have the same issues with my pelvis and uterus.....It was my chiari drs that found I also had EDS.....

Have u been checked for Hashimoto's as well, an autoimmune thyroid issue?

I wish I understood all these  connections, but I do see a pattern........

There is a group here on MedHelp for EDS-http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417?camp=msc

And there r  Health Pages with info as well.....
http://www.medhelp.org/health_pages/list?cid=186

Find a good NL and rheumatoid dr to help u with these issues....there is a EDS dr in Baltimore, MD.....not sure if u can get to her, but it may be worth the trip.

"selma"

[irishred795]

No, I haven't had a urodynamics done. Yes, my uterus is tilted. Sorry if this is TMI but I saw OB-Gyn last week and it took a really long time for her to get PAP smear sample b/c of tilting, it was also pretty painful--she said maybe it's tilted because I had bigger babies. My pelvis is twisted: right side is tilted forward, left side is tilted back. My bladder has prolapsed, too, according to OB-Gyn. I was kind of hoping most of this was over after seeing NS/Chiari Specialist at Cleveland Clinic. I do bruise easily and have trouble with keloid/scar tissue any time I am sutured. Scar tissue has causes carpal tunnel in my left wrist. I had my gall bladder removed last July and have one very noticable scar.  My friends' surgery sites aren't even identifiable until they point them out. I also had some stitches tear out, even though the surgeon used sutures and glue to close the wounds. I'm 33 y/o and have arthritis in my neck. I looked up EDS and it looks like those things could be symptoms. My mom has Mitral Valve Prolapse, but I do not. I had an echocardiogram done last fall before I was dx'd with Chiari, neurologist was concerned about a TIA causing symptoms.

[selmaS]

Hi...I  see u r wondering if ur issue could be tethered cord, and that is a possibility, but it  is also possible for it to be Ehlers-Danlos....

Have u had a urodynamics test done?....this measures the bladder function.

I do have TC and EDS...and I have the issues u mention.....but I was not dx'd with pubic symphysisitis. My pelvis and uterus are both tilted....not sure if that is related to ne of this and wonder if u know if ur's is as well?

Chiarians once dx'd should have C-sections, and it seems to be the preferred childbirth option for those with  Symphysis Pubis Dysfunction .In reading everyday living with this condition is mentions many things I do to compensate for my issues...so I am not sure what else to tell u, but do get checked for EDS and TC to rule them out.

"selma"